July 13, 2015

Progress

A seagull swoops down in an arc too close for comfort, and I automatically step closer to Justin as we make our way down the boardwalk, ready to fight the bird for the pretzel piece he has in his hand. The “airborn rat” as I like to call them leaves my son alone and flies off to brighter conquests, and I relax my pace a bit to allow Justin’s two “on-call BCBAs” to catch up to us.

Yes, his private autism school has Board Certified Behavior Analysts who make free house calls. Have I mentioned lately how much I love his school?

As always our conversation steers toward Justin and his progress, and I admit to our companions that I almost felt guilty booking them in this four week arc, as my son is doing so well at so many of the excursions that used to be so challenging for us. They remind me there is always room for improvement, and I smile, because in the world of ABA there always is.

Justin pulls ahead of us and I scramble to catch up, leaving our two therapists to talk amongst themselves. It is one of those gourgeous days at the Jersey shore, cerulean blue skies with just a powder puff of clouds, and a strong enough breeze so that I don’t sweat. I’m trying more and more lately to live in the present, so I relegate thoughts of laundry and dinner to that shelf in the back of my mind where unpleasant things like chores reside. I think back to when we first walked these boards nine years ago with a stroller and then three-year-old Justin, and I marvel at how much has changed.

He has grown up, my boy. I have a twinge of both regret, and honestly relief as well, at how fast it’s all gone.

Nine years ago I’d come laden with both dread and a stubborn optimism to this Jersey shore enclave, adamant that my son get out of the house. I harbored hope he’d eventually love the beach as much as I do, knew in my soul we had to try these trips while he was still small enough for me to manage him by myself. Our first summers here were frankly, just work. My small son abhorred lines, and let me know this with his frequent pinches and bites, the scars of which I still bear today. It was so much effort for so little joy, but instinctively I knew we had to persevere both here and other places, establish a precedent so Justin would not spend his entire childhood in our home watching Baby Einstein videos.

Yes, I know every one of them by heart.

We eventually conquered his antipathy toward waiting, but in the last few years the reinforcing call of the pretzel I always buy him took precedent over the allure of the rides, and we battled over his desire to avoid anything that twirled and replace it with a carb. I worked hard with our ABA friends over three separate summers, trying different protocols and sticking to them with stubborn tenacity. Last summer we finally got to the point where Justin will go on three or four rides first, and ingest his prize while going on a half-hour walk with his mom. My son now shows abundant delight during the rides, displaying a joy I knew he’d have if he could just relax his routine enough to try them.

I just want to say to anyone starting out on this autism journey, anyone wading in days of therapy and outings that should be fun but are just plain work, that we didn’t start out this way, me and my boy. We kept at it for years he and I, to the point where my son gladly goes to places most families take for granted their children will find amusing. I no longer have that vise clutching my chest when we go out, the worry that he’ll tantrum and I won’t make it back to our car, the fear that I won’t be able to handle him alone. Those angst-ridden days have vanished, swept up in the gentle breeze of the cerulean sky we walk through, together.

My advice to those of you just starting out with autism is to identify those things that are “musts” for you and your family, persevere with those wishes, and jettison whatever isn’t important. Ask for help. I’ll say it again- ask for help.

Keep trying, even if it seems impossible, even if your first attempt is grueling and ends badly. I will never promise anyone that things will get better, because every situation is different. But I have found over the years that even with a severely autistic kid things do eventually get easier, but not if we don’t lay the groundwork for success.

I’ll say it a third time- ask for help if you need it. Make a plan with a plan B, C, and D for any outing you want to try.